It’s never easy saying goodbye to a loved one, young or old. Yet, at KrabbeConnect we believe it’s important to provide you with valuable information on how you can support researchers in their quest to identify a better treatment or a cure for Krabbe disease. The Study in Neurodevelopment in Rare Disease (NDRD) at the University of Pittsburgh Medical Center (UPMC) established a brain and tissue bank in May 2015 as a resource to support medical and scientific research utilizing human postmortem brain tissue and related biospecimens.
The NDRD Brain and Tissue Bank is a centralized repository, utilizing the same platform as the Alzheimer’s group, for the acquisition, receipt, and dissemination of samples solely to advance the research on neurodegenerative conditions like Krabbe. Some of the goals of the brain and tissue bank are as follows:
- To further understand conditions of the nervous system in leukodystrophies
- To gather disease related information on the brain and tissues of Krabbe disease patients
- To increase the availability of and access to high quality specimens for Krabbe research
- Studying the human brain and it’s surrounding tissues provides valuable insights on the scope of the disease, often difficult or unattainable through animal models.
- To collect reliable data on engraftment of Krabbe transplanted patients
There’s never a right time to consider donating your loved one’s brain and tissues. It’s a very sensitive and emotional decision and at no point should you feel a strong influence from any one individual. A donation of this kind is one only a parent or a caregiver can make.
For further details on the process of donating, answers to commonly asked questions, the infrastructure for collection, analysis, and distribution, please visit Partners for Krabbe Research.
For your convenience here is a copy of the Brain and Tissue Banking Brochure for Krabbe and Other Neurodegenerative Diseases:
